Tag Archives: special needs

What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

Fear. I have grappled with fear my entire life. I’m 54 years old. You’d think I’d have figured out a magic formula to ward off fear by now… but I have not. However I have figured out some things that used to frighten me, but that no longer do. Things like this:

“Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that’s an IQ of 70 or less.” ~ Wired Magazine 2008

“Roughly 25 percent of people with autism speak few or no words.” ~ SFARI 2013

These two quotes had not yet been written when my daughter was diagnosed, instead there were countless other “statistics” spoken and/or written as though fact, that terrified me. I had not yet learned to question everything we were told about autism. I had not yet realized that almost everything people said to us about autism and our daughter would turn out to be untrue. I had not yet understood that it was these types of things that caused me fear, not my daughter.

Often someone reaches out to me and they are filled with the same fear I once felt. They remind me of all those predictions, the “statistics,” the warnings, all the things people said to us that caused me to stay up at night. Terrified because the way autism was spoken of was filled with dire predictions, awful statistics, and because I did not yet know what autism would mean for my daughter.

It is one thing to read statistics that make you feel terrified and another to live with a person these statistics claim to represent. A lived life, a human life, a living, breathing, feeling, human being who also has fears and thoughts and desires. So many parents need help figuring all of this out so they can help their children flourish. Parents who hear and read all the terrible things people say about autism and Autistic people and then are faced with their child and find all those things being said distance them from the genetically closest human being they will ever experience in this life. (This was something Emma wrote to her brother not so long ago – “the one closest genetic person to you.”)

Statistics do not help us parent better.

One of the single most important things Richard and I began doing was to talk to Emma as though she understood, even when we were not sure she did, even when she walked away, even when she seemed uninterested, had her back to us, closed her eyes, said words that seemed completely unrelated, wandered off to some other part of the room, even then, we kept talking to her, including her in whatever conversation was going on. And now. Now we are so glad we began doing that, because, as it turns out, we were right, she understood it all.

Yesterday, while at Emma’s school, her teacher showed me a sample of the state assessments that Emma is required to take, though there were record numbers of parents this year who protested them by opting out. These assessments are done twice a year and take an enormous amount of time and energy from all involved. The page the teacher showed me was about Ronald Reagan. It was a series of facts that are read and then the student is supposed to choose the correct answer from two choices related to the facts just read. I decided to use the page as an example of why I so vehemently object to these state required assessments as they are currently laid out.

I read the facts to Emma and then asked her to give me the answers by saying the correct answer out loud. This is how the test is typically done. Emma chose the last choice to each question every single time. I then said, “Okay. Now let’s do this using your letter board. I asked the same questions, only this time, offered her the letter board and without any hesitation she got 100% correct. I then asked her to circle the correct choice and she was able to do that too, which was interesting to see.

We did not go over more of the assessment, but for all those students who are like Emma, these assessments are useless. They are not telling anyone anything helpful. In fact they are giving inaccurate data. If Emma had not been given the opportunity to learn to communicate using a letter board, she would have no way of proving she knows the correct answer. How many children are just like Emma? I do not believe for a second she is the only one who cannot say what she knows, but if given appropriate accommodations would be able to.

It is incredibly frustrating to have the state require her to take such assessments, which, as they are currently written, do not accurately assess what she is capable of. This is my biggest objection with so much that is done when it comes to autism. Far too often the current conversation is by people who are looking at things, similar to these assessments, and basing their beliefs on the information they are getting from them. Incorrect information that tells us nothing of what a child is actually capable of. Assessments, that in fact are assessing nothing. What is being learned? What a massive waste of time and money. We should be doing better. Our children deserve better than this!

I asked Emma if I could write about a conversation she had with Soma last week. She told me I could.

Emma told Soma she wanted to open a day care center. When Soma asked her what she’d call it, Emma wrote, “Emma’s Hope Care.” Soma then asked what the philosophy of the center would be and Emma wrote, “No Autistic child left behind.” And then a little later Emma wrote, “early education” and “no behavior management.” Soma asked Emma where this center would be located, Emma wrote that she intended to have several, but that the headquarters would be in Chicago. I smiled when she wrote that as my brother and his wife live nearby as does our friend Ibby, or as Emma calls her, “Ibby from Ibbia”. Emma also said there would be a center in New York.

This was an easy back and forth conversation, with Soma giving her thoughts about things then asking Emma for her thoughts or Emma volunteering her opinion without being asked. Emma pointed to letters on a laminated alphabet board while Soma spoke, and on it went. It was an example of something most speaking people take for granted. We do not think twice about exchanging an idea with another, asking questions about things we don’t understand, listening to the other person, formulating an opinion, discussing, perhaps disagreeing, but in the end each person coming away with more information than they had before entering into the conversation.

I was fascinated to hear that my daughter knew about the “no child left behind” bill, passed by the United States Senate in June of 2001 and signed into law in January, 2002. I also wondered if her comment, “No Autistic child left behind”, was said with a touch of irony and humor, perhaps even sarcasm, as the current situation in so many special education schools in New York City, both public and private, are leaving a great many Autistic children behind. In fact children, like my daughter, are regularly put into classrooms where a high school diploma is not a given, much less a goal. Not only has Emma told me she wants to get a high school diploma, but she intends to go to college as well.

But what I loved most about what Emma wrote was her obvious compassion for others and her desire to do good. Last fall she wrote about wanting to visit “old people” and then added, or “people in a cancer hospital.” Funny how when you listen and watch what Autistic people are saying and doing, it is not in keeping with what so many non autistic “professionals” are saying about them.

Bounce, bounce, twirl! Bounce, bounce, twirl! I’d provide a visual, but I don’t have one, so you’re going to have to take my word for it…

Yesterday was Emma’s first day at her new school. Emma was scared and anxious. I was scared and anxious. Every time I tried to do the breathing exercises we’ve been practicing, Emma begged me to stop, “No Mommy. I don’t want to do breaths!” So I did them quietly to myself hoping she wouldn’t notice. We did exactly what we planned. I took her to school. I brought her up to her classroom where she joined three other children, two non-speaking and one verbal. I stayed with her longer than I should have, but seated across the room out of her line of vision. Her head teacher, who’s been teaching for more than ten years, and special ed for six of those ten, was kind, respectful yet reassuringly authoritative without seeming intimidating. I set the timer for three minutes, gave it to Em and told her I’d leave when the timer went off. She said, “Go sit with other kids when Mommy leaves” and I cursed myself for not having set the timer for 10 seconds, at the same time congratulating myself that I hadn’t set it for 10 minutes. But that was the kind of day it was. A day of juggling opposites. Emma’s favorite book kept up a steady patter in my head… Matman stands, matman sits, let’s say opposites! Staaaaaannnndddd! Siiiiittttt! Staaaaaannnnndddd! Siiiittttt!

And in between matman’s curious chant, I watched and listened. I could see Emma relaxing. I could see her watching. She began to join in. The timer beeped, I stood up, Emma walked over to the table to join her peers, just as we’d mapped out and I left. When I returned to have lunch with her she was happy and laughing. As we sat in the cafeteria with her teacher, aides and other kids I mentioned the “letter” I’d written. I said, “I hope you didn’t feel it was condescending, I didn’t mean it…” and one of the teacher’s aides interrupted me and said, “Not at all!” She then went on to tell me she’d gotten out a highlighter and made notes. She and the head teacher reassured me that they appreciated it and credited it with the success of Emma’s first day. I was relieved and grateful for their kindness. When Emma was finished with lunch, she turned to me and said, “Go with Mommy to the big carousel?” This was what I’d promised and I nodded yes. As we got up to leave, Emma turned, said, “good-bye” and then said each person’s name and blew each a kiss (the ultimate compliment from Emma and not something she usually does.) It was all I could do not to openly weep with relief.

There’s a great deal of talk about us parents. How we feel, what we think, our emotional state, our perceptions, our understanding of events as they occur, what we think our child may or may not be feeling, thinking, understanding. All of it is through the filter of our own experiences, what we’ve learned or been taught. It takes a leap to realize what we think we know or believe may be incorrect. That’s a hard concept to digest. It’s taken me eight years and there will always be more for me to learn and understand, I’m still very much at the beginning of this journey. This fall will mark eight years since Em’s diagnosis. Eight years ago when I believed I knew things about my daughter, only to learn how very wrong I was.

I think I understand and then find I really don’t. I don’t “own” Emma, she isn’t “mine” in the sense that she is not my possession. She is a being in her own right, with her own ideas, opinions and thoughts. I have ideas about what constitutes a quality of life, I have opinions about other people I meet, I view their lives through the lens of my life, my hopes and dreams. It’s easy to fall into the idea that my views are the correct views, but I know how often I am incorrect.

I began this blog to record Emma’s journey, but have found I am increasingly uncomfortable making the assumptions necessary to actually do that. In recent months I see this more accurately as a record of my journey. I find myself not wanting to talk about Emma as much and when I do, I ask myself is she okay with what I’m writing? I have her photo splattered all over the internet and while I am perfectly fine divulging the gory, messy details of my past in a public way, I haven’t given Emma the choice. I’ve just done it. I don’t know where to go from here. Just because she often cannot communicate her ideas and opinions doesn’t mean she doesn’t have any. I know now how incorrect this assumption is. I’ve asked her about this blog. I’ve shown it to her. A few times she’s asked me to read her a post I’ve written. I’ve asked her which photo is okay to post, but just because she points to one, doesn’t necessarily mean it’s okay. It’s a dilemma and one I am not clear on, though increasingly I’m uncomfortable with the choices I’ve made.

Someone once said to me, “We give birth, the umbilical cord is cut and from that moment until we die our job is to learn how to let go.” The timer hasn’t beeped yet, but I know it’s ticking.

Yesterday afternoon I received the following text from Emma’s therapist Joe – “Heading your way. Em had a rough day after museum trip. Wants to see you.”

First of all, I’d like to point out that the fact that Emma was able to communicate to Joe that she’d had a rough day is a massive leap forward. Secondly that she was able to then make it known that what she now wanted to do was see me was nothing short of amazing. It required her to identify her feelings. It required her to map out what might make her feel better. It required her to verbally put together the words in such a way that they would be understood. It required her to then make her request.

Yesterday morning on the subway headed to my studio I was reading the memoir by the autist, Rachel Cohen-Rottenberg, Blazing My Trail on my ipad. It’s a wonderful book, for those who don’t know of it, and had fully captured my attention when I felt a light tap on my arm. I looked to my left and there sat a woman, about my age or maybe a bit younger dressed in a suit, clasping a briefcase. “Excuse me,” she said. “I get claustrophobic in subways, especially when they stop and it helps if I have someone to talk to. Do you mind?”

“Oh,” I said, surprised by her directness, but also relieved that she seemed genuine (this is New York City after all) and was clearly frightened that our train had come to a halt in the middle of the tracks, something I hadn’t even noticed until she tapped my arm. I closed my ipad and turned toward her. “Sure,” I said. Not at all sure what to say next, but because I had just been reading Blazing My Trail in which Rachel Cohen-Rottenberg talks about wishing people would just ask how they might help, I asked, “What can I do?”

“Just talk,” she said, then to help me along she motioned to my ipad, “What were you reading?”

So I told her about the book I was reading and how wonderful it was. We then talked briefly about autism, something she knew almost nothing about. I asked her where she was headed. She told me about a business meeting she was on her way to at Rockefeller Center and how she was nervous about it. And then the train began to move again. She took a deep inward breath and exhaled, shutting her eyes momentarily before opening them again and smiling at me. “Thank you for being so kind and talking to me. You have no idea how much it helped.” At the next stop she got up. I wished her luck and she disappeared. As I sat watching her leave I thought about how great it was that she had figured out what she needed to do to help herself through what was clearly a stressful situation. And then I thought about Emma. I thought about how I hoped Emma would one day be able to express herself in a similar way. I thought about Rachel Cohen-Rottenberg’s memoir and how she has learned through a great deal of trial and error to get her needs met and I thought about how hard it is for so many of us to know what we want let alone muster up the courage to ask for help.

Not eight hours later I received Joe’s text – “Em had a rough day after museum trip. Wants to see you.”

Wow!

For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book

Emma washed her hair this morning. By herself. With almost no input from me. Emma is ten years old. Emma has autism. I used to think those few sentences would suffice. Keep it short and sweet, age, diagnosis, what more needs to be said? But I was wrong. Most people who do not live with a child with autism have little or no idea how monumental something like washing her hair unaided is. Okay, so I stood outside the shower and had to do a little coaching – “Lather the shampoo on the top of your head too, Em. Good, now behind your ears, don’t miss the hair on the sides, just above your ears. No, not like that, Em. Like this.” Then I demonstrated by pretending to shampoo my own hair, as she watched me and did her best to mimic my movements.

For the past four years, since Emma began preferring showers over baths, Richard or I have aided her in washing herself and her hair. Richard’s swimsuit hangs in our bathroom, damp evidence of his continued support. The few times I tried to let Emma wash her hair on her own, I regretted it. Once her hair dried, revealing large patches of unwashed and now even greasier hair, it was all too apparent that help was still required. As with everything, it is not that Emma cannot eventually wash her own hair, it’s that it takes a great deal longer for her to learn. Years, actually. Many, many years. “Maybe we should move to France,” I suggested one day after a particularly lengthy and difficult session trying to get Emma to rinse the shampoo out of her hair. Richard looked at me quizzically.

“They don’t take bathing as seriously as we Americans do.” (To all French people whom I have now possibly offended, forgive me for my blatant stereotyping.)

“Uh-huh.”

A bit later Nic announced that he too, would like to move to Paris. When I inquired as to why he thought this was a good idea, he mentioned the museums, the great food, I’m pretty sure he even said something about their coffee being superior, a beverage he isn’t allowed to have. But I knew his desire had more to do with the fact he doesn’t love showering either.

When Emma got out of the shower, she pulled a towel around her body. Carefully she began to dry her feet, legs, stomach, arms, just as she has been coached to do for all these years. “Em, you’re doing such a great job,” I said.

“Drying by myself,” she said, sternly. Then she corrected herself, “I’m doing it by myself.”

I nodded and smiled at her.

“Mommy, go away,” she said.

So I did.

For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book

Last night Richard and I went to a launch party here in New York City of Ekso Bionics with a live demonstration by Amanda Boxtel. Amanda was in a skiing accident over 20 years ago, which left her a paraplegic. For more than two decades Amanda has lived her life from a wheel chair.

“Imagine wanting something so badly for years and years—fluctuating between acceptance of what is and hope for something better. Imagine if that one thing you longed for is to stand tall with your legs supporting your full body weight, and then taking your first step.”

When we took Emma to Costa Rica for her first stem cell treatment, fluid seeped from her spine into her blood stream. Suddenly she was in excruciating pain and Richard and I were terrified. Amanda wrote me and her letter, one of many I have kept, was a calm voice of strength and reassurance. Amanda has been to India six times for stem cell treatments. She is an inspiration and source of hope for all.

Watching Amanda stand and then walk last night was a visual confirmation of what is possible in this world, if we never give up. I think of Amanda often as I work with my daughter, Emma. Writing is difficult for Emma, it does not come easily. But then walking does not come easily to Amanda either and yet she has never allowed that to slow her down.

Someone asked me the other day – What’s it like having a daughter with autism?

The flippant response would be – I don’t know what it’s like to have a daughter without autism. But the more thoughtful answer is a bit longer and more complicated. My own experience of being a daughter to a mother with whom I feel deeply connected to, a connection that many, I have learned over the years, do not have certainly plays a role in my answer. I have always felt my mother and I share something that goes beyond the usual feelings of responsibility and gratitude toward someone who gave so much in order that I might have a good life. It is as though we share something much more than the history and past of living under the same roof for the first 17 years of my life, something I cannot adequately put into words. We have a closeness, a bond and yes, a friendship that only a few of my female friends can relate to regarding their own mothers. I have often said that if my mother were not my mother, I would wish she were. I don’t actually know many people who can truthfully say that about their mothers. I am lucky. I get that.

So when I was pregnant with Emma, I fully expected to have a similar experience. I knew right away she was a girl. Don’t ask me how, I just knew it. For one thing I began to wear pink, a color I never liked until Emma entered my being and for another I craved spinach and blue cheese during my first trimester, as opposed to steak and all things meat when pregnant with Nic. Okay so I’m not being completely serious – though all of this is true – the pregnancy was different with Em, it just was. Without meaning to or even consciously trying to, I visualized my soon to be daughter. I knew she would have blonde hair, blue eyes and broad shoulders, as both Richard and I share these things, but beyond that I couldn’t know. I sang to her, just as I did when I was pregnant with Nic, I talked to her, read to her and dreamed about her.

While pregnant with Emma, I was walking on Fifth Avenue one afternoon, when I passed The American Girl store. It reminded me of my first and favorite doll, Maribelle, a gift from my mother to me when I was little. Maribelle came in a blue and grey striped trunk complete with shoes, gowns, dresses, she even had a fur coat! (I still have Maribelle – she and her trunk reside upstairs in my mother’s house.) I saved her, intending to give her to my own daughter, were I fortunate enough to have one. Looking through the large windows of the store I fantasized of the day I would bring my daughter there and how she would choose a special doll. A doll that would be like Maribelle was to me – a companion, a doll she would whisper secrets to and spend hours upon hours playing with.

Richard and I were not the kind of parents intent on placing our yet-to-be-born children on waiting lists of the most coveted New York City preschools, looking to the day we could sit listening to our child’s speech having graduated from Harvard Summa Cum Laude. Ours was a more unconventional approach – at one point we fantasized about putting all of our belongings in storage and traveling the world for a few years. We spent many an evening discussing the places we wanted to travel to, which included Tanzania, Lebanon, Egypt, Brazil, Morocco and Laos. We poured over guide books and vowed that once both children were out of diapers we would make our fantasies reality. We had no way of knowing that Emma wouldn’t be out of diapers until she was eight and a half years old. We couldn’t know that once she was out of diapers we would be scrambling to cover the staggering cost of her care, making any dreams of extensive travel abroad impossible to seriously contemplate, not to mention the sheer logistics of traveling to a foreign country with a child with special needs.

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It. It’s a “book” that when one shakes the ipad, the perspective of the story changes. The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity. Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone. His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope. James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god. I cannot even define that word. It is not a word that holds any meaning for me. But I do know what it is to struggle with hope. Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away. Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society. The continued negligence and worse, abuse, of people with disabilities is rampant. Their abuse is done by people who have deemed them incompetent, imbeciles and without value. This is the common thread that exists in the abuse of all groups of people throughout history. It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes: “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with. My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years. I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed. I thought that if I just had more will power I would be able to stop the destructive behavior. I believed that the bulimia was something I could control. I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior. It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior. Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now? Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?” With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it. In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

The scene in the airplane last week involving the man with autism, has stuck with me. I keep wondering what the airlines would need to help them cope with situations such as the one we witnessed. Of course I am approaching this question with the assumption that they are interested in mitigating the damage and distress such a scene may cause, not only for the man with autism, but for the other passengers seated nearby, as well as the flight crew. At the very least – the airlines and all such companies who may come into contact with persons with autism should be educated enough to know how best to deal with most situations that might arise. Given the current rise in autism, it seems scenarios such as the one I described last week will occur with increasing frequency. At the very least, it does seem obvious that when a person with autism has requested a window seat they should be accommodated, just as someone who requires a wheelchair is given an aisle seat.

Why is it that neurological differences are treated any differently than physical? The answer is – for the most part neurological issues go unseen. We cannot see inside the person’s brain and so we make assumptions. Assumptions that the person has a psychological “problem” or are simply behaving badly because they are – poorly brought up or have emotional problems. We have words for people like this, most of them cannot be written without using a lot of keyboard symbols. We have little tolerance for those who seem to indulge their worst desires and allow themselves to act out on those selfish interests. But what of the people who, like the man we encountered last week, have autism? Do we not, as a society, have an obligation to these people?

For more on autism and my daughter, Emma’s journey through a childhood of it, go to: www.EmmasHopeBook.com

Recently someone commented on the “I Believe” post. She wrote: “She is communicationg to you, she communicates to you ever day. With her body language, with her expression, with her unusual use of language.”

I loved receiving this comment (I love receiving all the comments people have sent over the past year, they are always informative, interesting and often provocative), which adds to the earlier discussion in the post “Embrace-ness-ness” regarding how we view intelligence in non-verbal people and what that means.

As I have mentioned before, my father spent the last 15 years of his life in a wheelchair and though he was cognitively unimpaired, he was treated differently, almost as though people thought his brain had somehow been damaged too. His accident and disability profoundly altered my view of the world. I came to see first hand the pain and suffering caused by people’s responses and misunderstandings of his disability.

When we are out in public with Emma, she is a free spirit. I have never seen her look in judgement at another human being, no matter how deranged they may appear. Emma will sit next to a homeless person on the subway without a second thought. If someone smiles at her, she will smile back. Emma is without malice. She is utterly void of judgement. And yet, I see the looks of fear and confusion on the faces of those who see her and do not understand what they are seeing. I see how their eyes watch her and then move to us, trying to find a clue as to why this child is behaving so oddly. Many times people assume she is behaving as she is because of our parenting or lack of parenting. We have been given well meaning advice from countless strangers over the years, people who feel they are, no doubt, helping us. Yet, if we tell them she is autistic, this explanation is rarely met with understanding.

Autism is an almost meaningless word, at this point. It covers such a vast array of behaviors and issues, it is no wonder people feel confused. Many people know someone who is autistic and assume all autistic people must share the characteristics of that person. This could not be farther from the truth however. There are people who are verbal, non-verbal, semi verbal, highly verbal, but echolaic, verbal with perseverative tendencies, etc. Some people who have received the autism diagnosis are highly functional, go on to have successful careers, excel in their chosen fields, others maintain jobs, never missing a day of work, while others cannot hold a job and will need assistance for the rest of their lives. Meeting one person with autism is like meeting one person anywhere. If that person is not able to communicate in a language we know, it doesn’t mean they can’t communicate or do not want to.

We all want to communicate. Perhaps the single most destructive belief about autism is that those who are diagnosed with it have little desire for human interaction. Just because they may not be able to communicate their desires in ways we are used to, does not mean the desire doesn’t exist. If I want to communicate with Emma I just have to spend time with her. She communicates with me in a wide variety of ways constantly.

Emma with her beloved balloon string – recovered from the laundry hamper.

For more on Emma’s balloon string and her journey through a childhood of autism go to: www.EmmasHopeBook.com

For those of you who have not viewed the interview of Carly Fleishman, you should: Autistic Teen Finds Inner Voice. (There is a 15 second ad that you must cope with, but the interview is well worth the annoyance of the ad.)

The clip is an amazing example of a severely autistic non-verbal teenager who finds a way to “speak” by typing on her computer. What occurs as a result is profound with far-reaching implications for all of us.

A follower of EmmasHopeBook, an English teacher of 7th graders, and I have been engaged in a “cyber conversation” regarding disabilities, “tolerance”, how we view intelligence etc. She wrote me this morning regarding her english class: “We’ve also been discussing the semantics of disability (and earlier in the year, racism and homophobia). The word “tolerance” has come up in class, and the kids actually hypothesized and agreed that it’s just not strong enough for the world they want to live in. There were some strong voices saying that they feel it is actually negative! One girl said that, to her, to “tolerate” someone or something means “OK, I’ll put up with this if I have to, not because I want to,” and then they universally decided that the ultimate goal they should be pursuing and activating for is something like equality, or, as the same girl put it “It’s something like ’embrace-ness-ness.’ ”

I love this. We live in a world, populated by people whom we often judge. We tend to come up with ideas about other people and the lives they live. The unknown can be uncomfortable and so we draw conclusions and then behave as though these conclusions were facts. Someone cannot speak and we conclude they’re intelligence is lower than those who can. A person is disabled and we conclude their intelligence is disabled as well. How can we embrace what we do not know or understand? It can be a frightening prospect and yet it is the key to a better understanding.

When my father finally succumbed to a wheel chair, having had a debilitating accident in his 40’s he was treated differently. People condescended to him, they felt sorry for him. He was a proud man, who at one time was extremely athletic. Being in a wheel chair changed him. He became despondent, he hated how he perceived people were viewing him – with pity.

When we are out with Emma, people at first believe her to be a “normal” little girl. But once they speak to her or are with her for an extended period of time, they begin to realize she is different. Usually they have no idea what is “wrong”, but the way they behave changes ever so slightly. Sometimes they’ll raise their voice or their tone will change. They clip their sentences, they speak as one might to an animal. (I have been guilty of many of these things, by the way.) It is confusing to be confronted with a child who looks neuro-typical, but who clearly is not.

I wish I could inhabit Emma for a day so I could feel and know what it is to be her. Would I treat her differently if I knew what it was like to be her? I hold onto the idea that if I continue working with her on her reading and writing, one day she’ll be able to tell me.

Last night as I lay beside Emma reading to her, she began laughing. I put the book I was reading down and said, “What’s so funny, Em?”

“Crash into foof!” she said, breaking into hysterical giggles.

“Did you do that at school?”

“Yes!”

“That sounds like fun,” I said. Emma was silent. “Do you want me to keep reading?”

“Yes!”

After I finished reading about our moon landing in 1969, I said, “One day Em, you’re going to be able to read and write. I can’t wait to read and hear what you’ll say.”

“Go to the computer with Mommy and Daddy,” Emma said.

“Is it easier to communicate on the computer?” I asked.

“Yes. Computer with Mommy and Daddy,” she said.

“Okay. We’re going to work on that,” I said.

“Mommy sing song?”

“Right. I’ll sing you a lullabye.” After I sang her a few songs I hugged her. “I love you Em.”

“So much,” she said.

Emma

For more on Emma’s journey through a childhood of autism go to: EmmasHopeBook

regarding the rampant abuse in homes for disabled people I am more than horrified. I am terrified and left feeling nauseous. It is like waking from a nightmare only to realize the nightmare is real.

The final line in the article is a quote from a memo that was sent out to all staff at a group home: “DON’T report in your notes that an Incident Report was filled out,” the instructions said, adding: “IF IT ISN’T DOCUMENTED, IT WASN’T DONE.”

That final quote says it all. The utter disregard for humanity, the unwillingness to see the disabled, whether mentally or physically, as nothing more than easy prey has become so commonplace as to be suitable for a memo.

Over the years we have heard Emma repeat things said to her, things she even now repeats, years later. Often they are things said to her in anger, and because she mimics the person, is so good at capturing their tone, their accent if they have one and their inflections, we often have been able to determine who has said these things to her. Usually they are benign comments such as – “don’t put playdoh in your mouth” or “line up!” or “Emma! Sit down!” Nothing abusive, all within what one might expect from teachers, caregivers, therapists etc.

But once, Emma came home and started yelling – “Sit down! You sit down right now!” “No you cannot leave!”

From those words I was given enough information to ask her a number of questions and realized her bus driver was yelling at her.

The next morning we spoke with her driver who it turns out was getting to her school before the school was open and so, instead of telling us and changing her pick up time, decided to let the bus sit idling outside the school for half and hour with Emma in it. When she stood up to leave, seeing that they were at her school and with little sense of time, the driver started yelling at her. Fortunately she had enough language for us to figure out what was going on. We immediately complained to the Office of Public Transportation, wrote a letter to our lawyer and put a stop to it. The next morning she had a new driver and a new pick up time.

The good news is Emma’s ears look fine. The bad news is her throat is a little red and evidently strep continues to make its way through the New York City schools. So we had yet another strep test done. The immediate results were negative, but we’ll know more today or tomorrow once the culture has had a chance to grow. So Emma is staying home today on the off chance she does have strep and so she won’t needlessly contaminate her fellow students.

As I write this, Emma is leaping around the living room singing, while waving a thin strip of plastic around like some sort of experimental ribbon dance. Every now and again she stops and stands very still while twirling the plastic around and around, seemingly mesmerized by it only to continue jumping, singing and dancing a few minutes later.

It’s impossible to know what Emma is thinking or feeling. I watch her and make assumptions, much as I did yesterday regarding her ears, only to find that perhaps she has strep. I think I’ve said this before, but autism throws all maternal instincts right out the window. Whenever I think I have an idea of what’s going on with Emma I am almost consistently proven wrong. She complains of her ears, look at her throat. She complains of her ears, I suspect her throat (pride myself in being a quick learner) and it turns out it’s her ears. It’s as though there’s some sort of “Emma’s Law” out there, whatever I think is going on – I’ll be wrong. You think you’ve figured this out? Ha!

Yesterday I did what many parents do when confounded by their child’s ill health. I went to the internet and googled – ear pressure, ear popping and a number of other things. All of which was fine until I read about a troubling condition some children are afflicted with called – Blocked Eustachian Tube – a decongestant was recommended followed by a visit to the doctor and Barotrauma, the only suggestion being a doctor’s visit. Emma’s pediatrician didn’t mention either of these things. But now I’m convinced Emma has some horrific condition which will only be remedied with invasive procedures, possibly surgery and I’m traveling for work tomorrow, so it’ll be up to Richard to cope with all of this in my absence. No one has said any of this to me, these are the conclusions I have come to after going onto the Internet for an hour.

All of which is to say – I must avoid the internet when it comes to diagnosing my child’s ear problems.